Category: maddie

This week we took my daughter Maddie to a new specialists. This was her 22nd Specialist. Twenty-two times we have sat in a specialist waiting room and have answered countless questions. 22 times. This number doesn’t even include dental/oral specialists, physical therapists, and all the other extra doctors/practitioners we have seen over the years.

We left frustrated.

We left a little more resigned.

We left a little more heartbroken.

So here are my thoughts, not that any specialist will ever see them.. but it makes me feel better to get them on paper. I realize that there are many specialists out there doing a fantastic job and making a huge difference in the lives of children (Dr Wasserman is our hero!) But for every incredible doctor we have seen, we have a handful that have left scars.

Those scars hurt.

And when your whole life is about finding help for your child, having a specialist add to the wound is wrong. I truly don’t believe they realize what they are doing… so here are my wishes and recommendations:

My child has a name.
Please make an effort to talk TO my child, not at my child. Even better, call her by name! The best way to make a connection is to find a few moments to get to know the patient. I realize that you don’t need a connection, but WE DO!

Read the medical chart before entering the room.
If we are seeing you, the likelihood is that there is a reason! Please don’t ask us simple questions about diagnosis and referrals, we need to see that you have read the chart and have made an effort. And really, when I have to explain what the primary diagnosis means or how to spell it, how can you expect me to trust anything else that you have to say?

Honor the work that we have made to get here.
You may not agree with what other doctors have done or said in the past. In fact, you may not see any reason for us being in your office, but please honor the work it has taken to be sitting in your exam room.

Listen
When you ask a question, listen to the answer. Don’t assume that you already have the answer. We can tell and the best way to get a child to stop answering your questions is to show her that you don’t really care what she has to say.

Don’t discount our experiences
My child has been sick for 17 years. I have sat in countless doctors offices and have experienced more than you could ever imagine. My daughter is in the 1% club for side effects, allergies, and illnesses. I’ve lived through the fine print! Please, don’t discount our experiences. Just because we don’t describe it exactly how you read it in the textbook doesn’t make it any less valid.

My child is more than a test result and quality of life matters
I realize that your care is driven by and dependent upon test results, but those things don’t mean much to me. I care about my child and the fact that she is hurting. When tests results mean another dead-end, can you please offer more than “well, at least we have another no..”

Do a thorough examination
My daughter told you that she had seen 21 other specialists for a reason… She didn’t like your vibe. You then proved it by doing a minimal examination. bummer. You proved you didn’t care right then.

Acknowledge that you don’t have the answers
After 17 years of consultations and testing, I don’t expect you to have the answers. I pray daily that you do, but I don’t expect you to do so. So instead of brushing off symptoms and clinical observations, acknowledge that you don’t know what to do! We will honor that and invite you to join the journey.

Imagine life in our shoes.
I’m guessing that living life as a speciality doctor gives you the understanding that you are the smartest person in the room most days. Well, being the smartest person in the room may or may not be the case, but you could at least be empathic! I don’t imagine you have ever considered what it would mean to you and your mindset if you had to go through life knowing that no matter what you did, where you looked, or who you talked to, you couldn’t make things better/heal/fix your child!

Please leave me with hope
At the end of a consultation leave us with hope. Please. Instead, after sitting through an almost 2 hour visit you said there was no reason for a follow up unless the blood work came back “icky.” Really? How hard would it have been to leave us with the “I’ll be in touch” or something tinged with hope?! But to make a decision that we aren’t worth your time before even seeing test results? really? nice.

So what do we do? We continue to fight. We continue to research on our own. We continue… It seemed awfully easy for you to look at us and say that the current medical research doesn’t have a unifying diagnosis for my daughter. But it’s not easy for us.

and so we will continue the fight, we will continue to search, we will continue to hope.

I love watching Maddie perform. So much of our life is defined by the limitations that are put on her, that when she is able to participate in LIFE with her peers, we celebrate!

One of Maddie’s passions is colorguard/ winterguard. Participating in an event that is so hard on her body is costly to her. The exhaustion, sore muscles and constant bruising is a high price to pay, but worth it because she loves the sport.

Maddie is on Stephenville High School’s winterguard team and they have their championship competition on Saturday. On Tuesday, they were able to perform for the student body. They performed beautifully and it is always wonderful for their peers to see the amazing things that they are able to do!